Helping Healthy Children and Siblings Cope

“We have been through a lot and I try to help my parents but they say I need to focus on being my own age and doing what kids my own age do. I have to share a room with my sister … she has on her oxygen machine and cries many times at night, and that makes it hard.” –Sibling of a PH patient

“I worry about our kids. There’s so much weight I feel to keep them from being affected by my wife’s PH.” –PH caregiver

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What to Expect

Pulmonary hypertension can affect everyone in the family, including healthy children. When someone in the family is sick, many parents find it difficult to make time for everything and everyone that needs attention. This can leave children feeling stressed, angry or anxious, and parents feeling drained, guilty, and unsure about how to make things better. While there’s no magic formula for resolving healthy children’s PH-related stress, recognizing their feelings and experiences is an important first step in providing them with the support they need.

Every child responds differently to the stresses and lifestyle changes imposed on a family by PH. Some children will vocalize stress directly. Parents report that some healthy children worry aloud about their sick sibling or parent. Some kids express guilt or distress that they can run and play when the PH patient can’t. Others display visible anger or resentment that they need to go to school or help with chores when the PH patient doesn’t. Some parents also report that their children pick up on the stress of other family members in the house and ask questions that reflect worries related to “adult” problems like marital arguments, hospitalizations and finances. They may even ask about difficult topics like death.

Depending on personality, age, developmental stage, and a variety of other factors, some children may not be willing or able to vocalize their stress. One mother said that her healthy daughter refused to talk about PH and left the room whenever family conversation turned to doctors’ visits. More commonly, children may not articulate specific questions or concerns about PH, illness or the concept of death, even when invited to share their feelings. In such cases, children may present stress through behaviors or physical symptoms. Some children may act younger than their age, falling into old habits they had previously outgrown, such as sleeping with the light on or clinging to you in public. Siblings may compete with one another, vying for a parent’s attention. Children who feel everyone is focusing on the PH patient may act out or sulk. The external symptoms of stress can include bad behavior, low moods, stomachaches, headaches or trouble sleeping.

Even children who don’t show signs of stress are likely thinking about PH and how it’s affecting your family. Sometimes the product of these reflections are remarkably positive. A child growing up in a PH household is likely to absorb a lot about the ways in which family members work together and support one another. Many parents in the PH community are proud to report that their healthy children voluntarily take on responsibilities and roles that allow them to advocate for the PH patient and care for parents and siblings. One sibling shared, “I hope someday to find a cure for PH when I am a doctor and never see anyone go through what my family and PH friends do.”While PH can cause stress for parents and children alike, in the context of a loving and attentive family, children have the capacity to learn, grow and flourish.

Adapting and Moving Forward

No matter how busy and overwhelmed you feel, there are things you can do to help your healthy children cope with PH in the family. These are not to-do items to check off a list once and for all, but rather activities to help guide your family’s ongoing journey of coping and acceptance. For a non-patient parent in a PH household, there are lots of things you may struggle to accept, from your loved one’s diagnosis to the way PH affects your family to your limitations as a parent. Acknowledge to yourself now that you’ll never be the “perfect” mother or father. Between caring for a PH patient, paying the bills, getting food on the table, and your own stress, you have a lot on your plate. You can’t be everywhere at once, and you can’t be everything to everyone.

While there are a limited number of hours in the day, there’s no limit to the amount of love you can share with your children. When your intention is to create an inclusive, healthy and supportive home for your family, mistakes and false starts are ok. In fact, they’re par for the course. When they happen, remind yourself of your love and intention and begin again. Focus on the aspects of parenting you can control, rather than the many chaotic life factors that you can’t predict or influence. Here are a few goals to work towards to provide your healthy kids with the structure and support they need:

Keep healthy children healthy. Kids cope best when they’re well rested, eating regular and nutritious meals, and getting plenty of exercise. Siblings of PH patients are sometimes hesitant to run and play when their brother or sister with PH can’t do the same. If that’s the case in your family, try scheduling in sports and outdoor activities for healthy kids when your child with PH is busy with other activities, like music lessons or art classes.

Tell them you love them. Healthy children sometimes wonder whether their parents care about them as much as the PH patient, so make this an item on your daily to-do list. In addition to telling them through words, you can show your love through frequent hugs, tucking them into bed, leaving notes in their lunch bags, singing them songs, and cooking their favorite meals. While you may not have much extra time, displays of love and affection can go a long way towards showing your healthy children how much you’re thinking about them.

Be attentive on your terms. Children need lots of attention. When someone in the family has PH, it’s likely that they’re not getting as much as they would otherwise. It’s common for kids who want to be noticed to act out. Experience has taught them that when they misbehave, parents will stop what they’re doing and focus on them. One strategy for showing children you care without reinforcing negative habits is to give them extra attention when they’re playing nicely. Give your children small and specific complements throughout the day. For example, “You put your glass in the sink, great,” or “I love the way you’re concentrating on that homework.” While this tactic may not eliminate bad behavior entirely, it will give you the opportunity to actively communicate your love to your children on a more regular basis.

Keep a routine. Children feel safe and secure when they have a predictable day-to-day life. If every day looks different because of doctors’ appointments or your work schedule, make a weekly schedule rather than a daily schedule. Try to build pockets of dependable repetition into an otherwise complicated routine. Saturday morning chores, Sunday Fun Day, and Mexican food Monday can give children things to focus on and look forward to throughout the week.

Set rules and enforce them. While it’s a good idea to be patient with some regressive behavior in kids who are struggling to make sense of their emotions, make sure your children know there are repercussions if they hit, scream or bully. Sometimes setting and enforcing rules can be difficult, especially if you’re already feeling guilty that you’re not giving your kids enough attention. Keep in mind that discipline is as much for them as it is for you. Clearly defined limits can give children a comforting sense of structure in a world in which PH and other curveballs can sometimes make life feel chaotic.

Encourage open conversation about PH and treatment. If PH isn’t specifically addressed by a parent, young children will try to make sense of the illness by using their imaginations, while older children may turn to incorrect information from the Internet. Offer children clear, honest and brief explanations. Share more depending on age, capacity for understanding, and interest level. Ask them to explain back to you what is happening to the family member who’s sick. This will give you the chance to correct any misunderstandings or misconceptions. Some healthy children will blame themselves for the family member’s illness, and if that’s the case, they need to be reassured that PH was not caused by anything they said, did or thought. If they’re interested, give children the opportunity to take part in the patient’s PH care by marking the medication calendar or taking on other simple tasks.

Make time for them. When you can, schedule one-on-one time with each of your kids. Do something you both enjoy, share jokes and stories, and give children the opportunity to talk about whatever they care about most. These can also be good times to talk to your children about any questions or worries they have related to PH. They may need many invitations to talk before they feel comfortable voicing a concern. If kids aren’t ready to talk, that’s ok too. Some children process and cope best by simply spending time with a parent or doing something fun.

Anticipate potentially stressful situations. Pay attention to when your children exhibit symptoms of stress, and look for patterns. Some healthy children are most prone to moodiness or acting up when the PH patient is sick or hospitalized. Others feel anxious when the time comes for their own doctors’ appointments. Talk to children to determine what’s at the root of these anxieties, and correct any misconceptions that may be causing undue stress.

Be prepared for difficult conversations. Not all conversations will lend themselves to easy reassurances. It can be unbelievably hard to talk about the concept of death with a child, and even more difficult to talk about the possibility of a loved one’s death. But questions and concerns in this vein may present themselves, and if they do, you should be prepared to have an open and honest conversation. Do your best to take your time addressing children’s concerns, even if the conversation makes you sad or uncomfortable. Children can pick up on anxiety in adults, and evasive responses may only add to their fears. If your family has spiritual beliefs that you want to share, this can be a good time to do that.

Talk about stress. As children get older, they can become more active participants in managing their stress. In late elementary school you may consider talking to children about stress and what may be causing it. You can work together to come up with strategies for alleviating the stress. Some children around this age enjoy keeping a journal to record their thoughts and feelings.

Turn to a counselor. If a child’s stress has become unmanageable, it might be time to talk to a school counselor or therapist. Don’t see this as a failure in parenting on your part. In fact, sometimes being a good parent means giving your child the opportunity to talk to a professional who’s trained to help them work through problems. Ask your child’s teacher or doctor for recommendations, or visit the American Academy of Child and Adolescent Psychiatry (AACAP).

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.